Friday, June 11, 2010

Finding Acceptance

Whenever I discuss Ethan’s autism with friends and family, the conversation usually centers on how he is sleeping (or not), or what progress he is making in one of his therapies. We might also talk about milestones he has reached, but until recently, I’d never discussed my hopes for his future.

I was catching up with an old friend and she wondered what I hoped and dreamt for Ethan’s future. I had a surprisingly difficult time answering that question and our conversation made me realize how much I avoid thinking about the future. Of course, I hope most of all for his happiness, but I hadn’t really thought beyond that.

It’s much easier to envision hopes and dreams for myself. More than anything, I hope to join the ranks of those parenting special needs children who have found peaceful acceptance of their child’s condition. I’ve felt it before, but it was brief, fleeting. About one year after we learned of Ethan’s deafness, I embraced the beauty that is American Sign Language and felt a sense of pride that my little boy could be part of the deaf community. It seemed like less of a disability and more like an opportunity, a membership to an extraordinary and mysterious culture. That’s what helped me cope with the notion that he may never hear or speak.

I’m not sure where to look, or how to find this same source of acceptance with his newest diagnosis. Rather than celebrating his difference, the activities and therapies we do now seem more like a rejection of who he is and who he’s becoming. It’s just a matter of perception, really. So how do I change this mindset?

For now, I stay focused on the blessings in our lives, and I think that’s pretty effective for the most part. I look at all the compassionate people that work with Ethan and the friends and family who “have our backs”. I thank God for our health, that Ethan is alive and healthy, that we have a roof over our heads, and food on our table.

What else can I do?


14 comments:

Anonymous said...

In all things God works for the good of those who love Him. (Romans 8:28)

My grace is sufficient for you, for my power is made perfect in weakness. (2 Corinthians 12:9)

Trust in the LORD with all your heart and lean not on your own understanding, in all your ways acknowledge him, and he will make your paths straight. (Proverbs 3:5-6)

Cheer up and trust the Lord will take care of all these things. :)

tammy said...

I think that's a pretty amazing start! I have always found that focusing on our blessings and the positives have not only keep our days "sunnier", but bring my husband and I closer together as a team and as a couple to work towards the finding that meaning - whatever it may be. Of course there are always the days where we want to throw in the towel and make it all go away and ask why - I don't think it's normal not to. I love how you use the word "opportunity" vs. "disability". Made me smile. Ethan's a lucky little boy to have such amazing parents!

Cheryl said...

Heather,

I love this post and I love you. Focusing on the now and the good, positive, sunny days and those who love and accept Ethan for who he is right now, is the best thing you can do right now. No one knows what the future holds or just how far Ethan will go, the sky is the limit at this point. You are doing exactly what you should be doing, making sure he is getting the best education, is surrounded by those who love and accept him for who he is, helping educate others who don't understand and keep focusing on all he CAN do and how far he had come, instead of what he hasn't mastered (yet). With you and Rich as his parents, Ethan can't loose, and I mean that with all my heart. You have heard me say this 600 times, but you were born to be his mother.
Can I tell you that he just keeps getting cuter and cuter every single day? I guess you know that. XXXXXX

leah said...

Heather, Ethan is such a cool little boy- I can see his personality shine through, even in pictures!

There are days that I think about the future and it terrifies me- with the strange medical diagnoses we've had with Nolan, I scare myself breathless with the possibility that he has some strange metabolic disorder. It drives me crazy, so I only worry about today. And sometimes tomorrow, but not the long-term future. I hate the roller coaster that is "Oh, he's doing great!" and then, "Oh, we found this troubling thing during this last test..."

You are a wonderful mama and Ethan is growing and thriving with your love. You are also an amazing advocate for your son, by the way, and I am in constant admiration of your persistence in getting Ethan the resources he needs to grow!

Kristina said...

It took me a while to comment on this - even though I read it the day you posted it! - because I know exactly what you mean. Sometimes all we can do is get through the *moment* let alone plan for the future.

I have to say that my hopes for the future are ever- changing and so I tend not to spend too much time on it other than planning the next steps. When I've thought several steps ahead I usually get brought back to the here and now at a dr or therapy apt and that's not good! LOL!

It's so much more enjoyable to focus on the everyday blessings. I think this is the greatest gift our children are able to give us - cherishing the here and now. And for that I am grateful.

Anonymous said...

I hope that Ethan has a GREAT future. I bet that he will :D. Hey did you know that I broke my foot?:(

Kyla said...

I know what you mean. We're in such a great place with KayTar these days (developmentally, at least), but I remember exactly how it felt to be in that place of uncertainty. I still don't think much about the future, because I've learned that you just can predict how it might go with these kiddos! We take it one day at a time, thankful for the good and trucking right on through the bad. I feel lucky that we've found such great company through it all.

JonasTabr有香 said...
This comment has been removed by a blog administrator.
毓er曹妃sf炳hd張jtr珠 said...
This comment has been removed by a blog administrator.
Anonymous said...

I always wish you would write in your blog more since I love reading about E.

丞虹 said...
This comment has been removed by a blog administrator.
詹莉emmaagnes莉真 said...
This comment has been removed by a blog administrator.
leah said...

Heather, I thought I'd comment here so that you'd see it. I don't have access to email right now! JTC would probably take Ethan into their program. The kids here have all different types and forms of deafness- some are "vanilla deaf" and some have complicated syndromes. One this session has CMV with all the associated complications. Really, they focus on the whole child (they do not sign here, though, and really focus on listening and speech development). They have an OT on staff along with other professionals- it is a really great program.

fullsoulahead.com said...

The part of this post about Ethan's caregivers brought this very inspiring video to mind for me. Hope it touches you as well.


http://www.youtube.com/watch?v=TRTP2RpYAkQ